JewlsyJuls

Is My Doc Being Unreasonable?

45 posts in this topic

Yup, but I'm really only interested in the EEG activity for myself.  I scored a 0.0 for apnea related events.  Limb movements wouldn't easily be as easily trackable, but you could incorporate a gyro sensor in the headband to track tossing/turning.  not going for clinical accuracy here.  What do you expect for $200 :P

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Why?  All that really matters is how you feel.  If you're sleepy, you're sleepy.  If there's cataplexy, it's narcolepsy, otherwise it's IH.  Simple.  I can't tell you how many people in the sleep field have told me that MSLTs are complete junk.  They can only measure how fast you fall asleep, not how sleepy you are.  You can be sleepy and still not fall asleep in 20 minutes.  Insomniacs and apnea patients all report these problems.

 

Do you know how many normal and apnea patients can get a false positive MSLT, and how many narcoleptics can get a false negative?  There's a 50/50 chance the test will be wrong.

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Because I like EEG technology and BCI's in general.... I've been tinkering with the idea long before even considering I had sleep issues.

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Not to go off topic from the current conversation of this thread but...

 So how do you suggest I go about this? Do I make an appt with a couple of sleep specialists as a sort of consult, bring my records, and ask how they would go about treating me?Then decide which to stick with? 

How would others go about this, I wonder?

 

Figured I'd just quote myself rather than ask again :) I've never had to do this so not quite sure how to go about it. Thanks all!

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Go to your family doctor and say that you need a referral to another sleep specialist because of a personality conflict with your current one.  Just be honest and tell your story calmly.  You don't need to put up with abuse like that.  Good luck!

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Have you ever done it IH? <_< I mean trying to get your medical records from one Doctor to see another Doctor? My Doctor seemed to think they were his personal property and we had a loud difference of opinion. I pointed out that I paid for them and I paid for him too...that he was keeping them for me. He finally got the point and gave them to me. Some Doctors have huge egos and can't stand the thought that they might be proven wrong. I suspect the OP's Doctor falls into that category...but I do wish her luck.

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I've done it.  If her doctor says no, just say "I'm going to report this to the state medical board".

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I'd fallen, hurt my neck, was driven to E.R. by a friend, this was a skateboarding injury.  They clearly thought I was after pills and said it was only muscle damage, although that there were some irregularities which were likely developmental cervical disc degeneration matters in my neck.  I didn't get along with the doctor in the E.R., she gave me a big spew about wearing a helmet and straight up said I just wanted pills; which was absolutely not the case, I'd frikken hurt my neck.

They didn't even give me any ice, the 4-5 hours I was there; my Mother came and watched, it was outrageous, they'd drop the lifted bed with no warning, and they told me they'd not help move me from the wheel chair to the bed, that no screaming is allowed in the E.R.  It was one of my most awful experiences.  And, my shoulder as well as neck have never felt the same...

The following year, I went into the medical records room and asked for all records from the past 10 years, this included 4 sleep studies and that visit along with when I'd broken my thumb years ago...

Guess which files were not included. 

So, I went back in the following day and got very specific about which documents they'd 'not' included, basically in a not so friendly tone, I demanded the files.

They said, "oops, here they are, they were in this other" spot...  Bologna; as I read them, more and more about my neck became apparent.

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Why?  All that really matters is how you feel.  If you're sleepy, you're sleepy.  If there's cataplexy, it's narcolepsy, otherwise it's IH.  Simple.  I can't tell you how many people in the sleep field have told me that MSLTs are complete junk.  They can only measure how fast you fall asleep, not how sleepy you are.  You can be sleepy and still not fall asleep in 20 minutes.  Insomniacs and apnea patients all report these problems.

 

Do you know how many normal and apnea patients can get a false positive MSLT, and how many narcoleptics can get a false negative?  There's a 50/50 chance the test will be wrong.

 

There is Narcolepsy without Cataplexy.  I had the understanding that people with IH tend to sleep long long hours but still have EDS.  I also thought they did not have the audio or visual hallucinations, Sleep Paralysis, or the same sleep architecture.  I could very well be wrong though. 

 

When I was first DXed they said N w/o C, but after finding out what Cataplexy was I realized I definitely had that too.  

 

With the MSLT they are really just looking to see if you fall into REM quickly. I do agree that many Narcoleptics get a false negative due to many different reasons.  The key is you really can't get a false Positive.  Someone who is a "normal" sleeper shouldn't be able to fall asleep within (what is it like 10mins) for all 5 naps and they won't go into REM either.  This is after getting 7+ hours of sleep.  I am sure a normal person who slept like crap the night before or didn't get but 3 hours may be able to fall asleep quick for a few of the naps, but they wouldn't go into REM.  Plus the MSLT is paired with the night test to see how much SWS there is.  Narcoleptics do not spend much time there if any. 

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Not to go off topic from the current conversation of this thread but...

 

Figured I'd just quote myself rather than ask again :) I've never had to do this so not quite sure how to go about it. Thanks all!

 

You should be able to go to the new Doctor and fill out a form and they will do all the legwork to get your records.  Its a simple waiver form.  No need to ask your current sleep doc for it. 

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Personally, I like to think of N as a symptom, not really a diagnosis, in the same way that depression can be both a diagnosis and a symptom, because of the whole "secondary narcolepsy" do to other neurological issues or other autoimmune conditions.  I don't think I'd be able to fall asleep within 10 minutes, I don't nap well; a by-product of forcing myself awake all these years, plus the stress of the situation, though, I'm convinced I'd show a sorem or two.  Dr. Mignot just published a SOREM on a PSG is sufficient in 90% of cases to get an accurate diagnosis, so, the MSLT could potentially be phased out, and only used if no sorem activity was present on a PSG.  The study is/was published in a recent JAMA.

 

http://archneur.jamanetwork.com/article.aspx?articleid=1684863

 

Julie - finding the right doctor can be a pain, I got lucky with my sleep Dr I think (though the same can't be said for the clinic he's at).  I don't think there's any real simple answer, other than be honest and direct.

To get your records, shouldn't be too difficult, I told my place that I wanted a copy to take to my dentist who has sleep issues as well, and I couldn't remember his fax number.  Had it in 5 minutes.  Wasn't even a lie really :P

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How effective is melatonin?  Wondering if it'd be useful for me.  I have no trouble falling asleep as it is, staying there and regulating it is of course an issue.  How long does it stay in your system?  What would happen if I popped one in the morning?

 

Before I was DXed I tried everything to stay asleep.

 

When I went for my first office visit with my sleep doc I told him about everything that I tried.  When I said Melatonin he said it was more for people with Shift Disorder. When he mentioned he thought I had N he said Melatonin doesn't work on Narcoleptics.  He was right it didn't do anything to keep me asleep.  I have heard that it works for some people... so its worth a shot though.

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I've done it.  If her doctor says no, just say "I'm going to report this to the state medical board".

I had to threaten that as well, because my previous sleep doc was dragging his heels on getting my hypnogram to the new guy.

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Okay, so the first thing I want to say here is that I deal with a lot of doctors. Mostly it's for what I call "fun neurological extras" that come with narcolepsy, i.e. transient symptoms. I find that my biggest problem is that doctors often fall on 'defaults', which may be fine in most cases, I don't know, but it never really works for me. 

 

 

I want to go back to work and discussed this with her at my last appt, explaining that I want to adjust my sleep habits before starting a job. Currently, I go to bed around 11:30pm but the 1st dose of xyrem does not knock me out as it does for some people and I end up falling asleep around 1am or so. I have started taking melatonin as well so that I can go to sleep. I sleep until about 8am when it's time to wake up the kids for school and have my nap in the early afternoon. I just want to be able to wake a little earlier and maybe push my nap off until after work. I had no idea this discussion would spark a huge issue with my doc!

 

Firstly, it shouldn't spark a "huge issue" with your doc. I mean, you wanted to change your sleep habits and talked to your doctor about it. Health care professionals must know that overreacting to conversations serve for nothing other than patients not trusting them.

 

 

The last appt was nerve racking because she told me that if I wan to go back to work, I will need to be in bed at 9pm (10pm at absolute latest), am not to take any melatonin/sleep aids, have a 20minute nap around 10-11am, then a 1-1.5 hour nap at 2:30pm...YES, THAT'S DURING WORK. She was FURIOUS about the melatonin in the first place.

 

First of all, the idea of melatonin making anyone angry is just plain silly. I have to take it about three hours before I go to bed for it to work for me, but my neurologist suggested it for me to try. She warned me it might not work until I've taken it consistently for several weeks... which is kind of true. I don't understand why melatonin would make a neurologist upset/unhappy -- would she get upset about camomile tea?

 

Second, one of the biggest problems with what your doctor told you is that she can predict the future. This is not just absurd from a general medical standpoint, but also pretty lame when dealing with something like narcolepsy. It seemed perfectly reasonable to assume taking 2+ hours of Karate four times a week would be impossible for me in my condition -- except, just the opposite was true. Adding rigorous exercise actually treated a lot of my symptoms, boosted my health, and helped me sleep through the night. Had I stuck with "what will probably happen," I wouldn't have one of the best forms of treatment I've ever had. So while going back to work might put more stress on you/make you more tired, the added activity and stimulus can also help you.

 

Third, sorry, but the whole "in bed by nine PM" thing... sounds like she doesn't understand that insomnia is part of narcolepsy.

 

 

She told me if I can't make this prescribed schedule work, she will no longer prescribe me any meds as I would be "dangerous." Of course, without my meds, I lose my drivers license.

 

Okay, so a demanding doctor is one thing, but a threatening doctor? That's another thing entirely. Narcolespy is a systemic neurological disorder that cannot be controlled by sleep scheduling. I'm going to type that part again: narcolepsy cannot be controlled by sleep scheduling. Some people's situations can benefit from it, and maybe some do OKAY with that, but you can't cure narcolepsy with a tight sleep schedule. That's medical fact.

 

I mean, even without work, what if you couldn't make her prescribed schedule work? Would she threaten to stop prescribing you meds then, too? Life is complicated and stuff happens - most of us couldn't stick to a rigorous schedule like she described because... well, that's life. That doesn't mean a doctor should discontinue your treatment like an axe over your head.

 

I'm not sure what your doctor means by 'dangerous.' Did she bother to specify?

 

 

SERIOUSLY???? Is this reasonable to anyone else?

 

So, there is wisdom in being prepared for a rough transition with something like narcolepsy... going back to work could take a weird/long transition.

 

That being said, I would switch doctors -- call up another sleep specialist and get your files transfered... find a doctor who has a better bedside manner, or at least someone who doesn't threaten to stop your prescriptions on the presumption that s/he can predict the future. Any lifestyle change (changing jobs, starting part time, starting full time, education, etc.) will change your life... hence, the name. Right? And an adjustment period will follow, plain and simple -- that's true for people who don't have narcolepsy, too. Just because you have narcolepsy doesn't mean the doctor should make you feel guilty for, well, LIFE happening.

 

I mean, part of treatment for a life-long disorder like narcolepsy includes adjusting for changes.

 

If anyone asks why you switched doctors -- you can say something as simple as "bed-side manner issues."

 

Good luck,

drago

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If xyrem isn't knocking you out, you you probably need to take a break for it to come back full force.  I know this is amazingly difficult since you may not be able to function for  a few days, but it is worth it. 

 

I have found that a strong Mulungu tea can sometimes really help sleep, even better than a strong benzo, depending on the partial origin of the insomnia.  It's probably worth a try.  It is the only herb that ever really helped my sleep.

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Wow, thanks for the replies, guys :) Drago, I can't begin to express how grateful I am for all of the time and info u put into your reply and u have given me a whole lot to take into consideration.

 

Steak - I'm SOOO gonna find me some of that tea... And am really hoping I don't have to take a break from my xyrem... that would be disastrous!

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"Even during my sleep study a couple of years ago I overheard the techs discussing it. If you miss a single appt and reschedule it for after your next xyrem delivery, she'll cut off your xyrem shipment."

 

This, by itself, would make me switch doctors.  It's not as though you're taking an antihistamine and if you reschedule and miss a few days you might get a runny nose: Being deprived of regular narcolepsy meds is immediately emotionally damaging, financially damaging, and DANGEROUS. How are you supposed to GET to your appointment if you've run out of meds?  I have bounced between at least 4 different doctors (insurance company switches) in the last 6 years, and I've never heard anything close to this. Only the first one was an actual sleep doctor, the rest are regular GP's.

 

10mg of melatonin is a fudgeton (yeah, that's not a word); for a brief comparison just wikipedia it and note the reference to as little as 0.3mg being effective for circadian rhythm changes.  Everything I've read - and experienced - shows that melatonin is good for adjusting sleep schedules when you're not functioning on a 24-hour rotation (i.e., jet lag/time zone changes, shift work changes) but is not effective at helping to fall asleep when taken long term.  Have you tried a smaller dose, or a different brand?  Potency in supplements seems to vary a disturbing amount.

 

To fall asleep, I'd also recommend checking into valerian root.  This and melatonin (<1mg) were recommended by my doctor as the most minimal sleep aids, since taking any "real" sleep aid prevents me from waking for 12+ hours.  The valerian root just seems to be a mild anxiety reducer and since the only thing that tends to keep me awake is that I stress myself out about what will happen if I don't get to sleep fast/get enough hours of sleep, it's quite effective.

 

Finally, I'm just starting to check into ADA requirements; askjan.com got back to me quickly with some detailed advice.  I've been surprised at what employers are required to do (it's not as if they advertise it) and at how supportive a supervisor was when I mentioned to him that I would need accommodations in the future (pregnancy = no N meds).  Even if you switch doctors...which sounds like a safe bet...it might be worth finding out how your employer could (or must) work with you.  [[i'm in the USA, if you're not this is probably not applicable.]]

 

[Disclaimers:  I didn't read this whole thread, because I was caught so off guard by the part about the doctor that I quoted above.  And I'm not on Xyrem, therefore my reaction to sleep aids may be different.]

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